I want to start by apologizing for my lack of updates and posts in the last 2 months. I know many of you look forward to my updates here, and I have simply dropped the ball on doing so. I need to apologize to myself more than anyone, as I have realized over this timeframe that this blog was created for me, for my mental health, and for my personal airing-of-grievances and conquests. I need this space, and I regret not using it recently.
That said, I have had a lot of changes happening, and quite frankly, it’s been difficult to keep track of all of it, much less write them all in a cohesive, easy to read and understand fashion. Every day is a new adventure, some good, some bad. Today, I’m going to try and summarize my current condition without spending all day trying to do so.
I have had 2 IVIG treatments, a full treatment which involved a 5-day stay in the hospital, and a booster, which was done at a hospital infusion center in one day, and lasted about 6 hours. The booster was done on March 6th, and about a week after that, I started taking Atorvastatin (Lipitor) to combat my high cholesterol. My doctor prescribed me a dose half the strength I was taking prior to all of this (13 months+ ago) as it can cause Myopathy, and sure as shit, on the 4th or 5th day, the Myopathy hit. I had to stop taking it immediately, as my speech, muscle function, everything, went straight downhill, and drastically. Because of this, I really haven’t seen any results from the IVIG booster, so I’m pretty much the same as I’ve been since the end of February, which means:
I need a walker to move around. Or walls and door frames to hold as I shuffle around. I get where I’m going, but it takes a while and it isn’t pretty.
My speech is still the worst part of all of this, in my opinion. It worsens the more I use it, or as the day progresses and I grow tired. Usually it’s getting to its worst point about the time the wife and kid get home, ensuring my communications with those most important to me are kept to a minimum.
I do have an aide 15 hours/week. He helps me workout, keep track of the workouts, helps with meal prep, etc. He is very useful, and I am very grateful for his help and availability. Thanks Keith.
I still try to be extremely positive every day, but it is harder and harder the longer this continues to last. I’ve had to shift my thinking from “I could be over this in the next year” to “This might be who I am, now and maybe forever.” I’ll survive either situation, but obviously, I’d prefer a quick, full recovery.
I may be seen at the Mayo Clinic in Rochester. I will hear more next week and update here as soon as I do. I’m hopeful to be accepted as a patient, and even more hopeful that the doctors there will have more insight as to what is wrong with me and what to do about it. Wish me luck!
I really miss driving.
I need warmer weather so I can sit on the patio with my dog, Benny, and take in my Vitamin D that way. Someone talk to Mother Nature for me?
I miss Kellyn. Sunday is her birthday, so everyone visit her blog and wish her the happiest day ever!
I’m really going to try to post more, so please keep your eyes open. It’s best if you follow my blog by following the link on the right side of this page.
Until the next update, Happy Easter, Happy Birthday, Happy April Fools Day, etc, etc.